"It's all part of the process"

On May 28th I had my extremely stressful, and extremely confusing "assessment" for UC Davis Transplant services. This was big. Big enough for me to show early to Dialysis and only run for one out of my three hours, scheduled to finish at noon the next day with a two hour Saturday sesh. I was running late. I was doing my make up and changing in the car, and we didn't really know where we were going. UCdavis has a satelite site in Walnut Creek that I was lucky enough to wait two months for an appointment at, at an inconvineint time. As my mom and I rushed to a medical offfice we weren't familiar with, we argued and bitched, because thats what we do when we're stressed, and lately we're always stressed. We got there at exactly 11:15, exactly 15 minutes late. These appointments are similar to job interviews, only instead of making money I'm being paid in Kidney. My first interview was with the Social Worker, who was compelled by my story and assumingly loved me from the start. Next we filled out paperwork with the Nurse, then went in to see the Doctor. He was rude, and pushy, and didn't think I knew anything about my first transplant or my medical history. I did. I knew everything. Through the appointment there was limited (but not less upsetting) bad news, and aside from the RN calling my Mom fat and telling her to quit smoking (Bitch) and informing Dad of his high blood pressure, we were content and left hopeful that soon I would start testing donors at our new hospital.

Precisely two weeks later we got a letter from UCdavis, THE letter. When Mom informed me of the news, we were at a family shindig, and she had decided not to bring it along. All I could think about was what the contents of that letter would show. After the longest car ride home EVER from San Ramon, I rushed to the mail box, and tore open my letter. I skimmed ahead and read the very last word I wanted to read.

UNFORTUNATELY

I was rejected. We had lost our best option. I no longer have hope, and I'm no longer excited. I no longer have something to keep my spirits up while I moan through the leg cramps, nothing to keep me smiling through the nausea, and nothing to keep me from crying when my body aches so bad I cant walk. So what do we do now? We visit UCSF in October-as planned. I'm just going to try and be less disappointed when they turn me down too.

Dialysis, a whole new ball game.

On March 19th I had my first morning of Dialysis. I got there at 7am. I didn't know what to expect. I had heard the horror stories from fellow "kidneys,"(when you have other transplant friends you just call 'em by their organ of chioce) including but not limited to leg cramps, nausea, headaches. I was also told by some that it made them useless for the rest of the day, long naps are a must, and eating in restaurants would be a thing of the past thanks to the dietary restrictions. Most of this is true, some days. With dialysis there are good days and bad days. The bad aren't too bad, and the good aren't great. The "good" part about the big D is the Support system that goes along with it, I have a Dialysis family. Leslie is my most favorite RN, she greeted me on my very first day with a smile and something to laugh about, we enjoy talking about restaurants, and oysters, her ipad and gossiping. Alice, the other RN is a close second. My first Day, the Dialysis tech that helped me giggle through it all, was Scotty. He was a knucklehead with the best intentions. Goofing around was only part of his schtick, we had long conversations (that sometimes got him in trouble) about all kinds of things. It was nice not being alone, it was nice being able to laugh during one of the hardest times in my life. After Scotty came Jasmine, a fabulous german that also helped make me smile. Now i'm on the complete opposite side of the room with Oscar. Oscar and I get along famously and we always have something to talk about, he get's bonus points for complementing my hair all the time, and commenting on me losing weight :p did I mention weight loss is another part of dialysis? first I lost the water weight I had been storing up for the last year, and with the changes in my diet and loss of appetite, my body is looking 23 pounds lighter than it was in March, and I'm not complaining. I've also got Laura, who is oh-so sweet. Jamilla, who would go to the moon to help solve my issue with adhesives. Connie, she runs the joint, who is fabulously tan, has perfect pony-tail hair and works her ass off. (like evryone at DaVita Livermore) Rita at the front desk, always has a smile for me. Cynthia the dietician is highly qualified, very helpful, and very cute. Anne, the social worker would help me with just about anything I asked. These people help to get me through it. I'm so thankful that I was admitted into this Dialysis center, in my home town, with these great people taking care of me. It's little things, like having them in my life, that make giving up that much more impossible.

Boob Tubes

On March 17th of this year, I showed up to general surgery at Walnut Creek Kaiser, nervous as hell, to have a tunnel catheter installed in my Juggular for Dialysis acess. Right on my chest. Two tubes coming right out of my cleavage. Awesome. After getting past the idea that I would soon have a "boob tube," I started thinking that getting over the aesthetics may only be a small part of the recovery. Boy was I right. My dad and I sat there waiting for an hour when someone came up and told us that it would be about another hour, someone sicker than me needed my surgeon in the OR, we didn't mind, we never do.. It was another three hours, and finally they wheeled me downstairs. My heart started racing. I was very obviously anxoius as I discussed the various drugs they would use to dope me up, it was a conscious sedation- that's right folks, I was going to be conscious while the doctor dug a hole in my chest and shoved a tube down into my heart. And my anxiety was not curbed when I was wheeled into the cold sterile room, as they dowsed me in iodine and covered my face with a medical "sheet" of sorts. Not being able to see a procedure being performed is something I have a real problem with. When I can see what doctors and nurses and other medical staff are doing to me, I have a sense of control. I watched and listened carefully to what I could on the cold table in that cold room, with my face all covered. And slowly my speech started to slur and I drifted into a nap, a drug-enduced, plesant dream, lovely nap.(which I was later told required more than three times the "normal" amount of medication) And then I woke up.
FUCKING OUCH. I felt like a torn up rag doll that just lost an arm. It was some of the most excruciating pain I have felt, and I have felt a lot of excruciating pain. I would now lose my right arm, and most basic movements of my body for about three weeks, and I am not allowed to shower due to risk of infection, things we're going to get worse before they got any better, but I could finally feel alive again. I was ready for my first Dialysis treatment. I was ready to feel better.

I was born with one kidney... part two.

I woke up about thirteen hours later, with a 7 inch insicion and 37 staples in my abdomen, a crazy IV in my NECK, and a wicked bad case of dry mouth. Some of the Nurses I had that week in ICU and two weeks in 3W literally saved my life with their compassion, tricks, and tips. One of my fondest hospital memories involves my dad sneaking me Mike and Ikes to suck on during the week I was prescribed not to eat anything for fear of nausea. Our family and friends made survival possible that month, with rides to school for my younger brother, house and pet sitting, and an unbelievable Chirstmas set up to keep us believing in Santa, because my parents did not have the time and money to do it themselves.

We were ordered to stay closer to stanford than our house was, so we were set up at the Ronald McDonald house for a month and a half or so. Another home away from home, we had beds, and a kitchen with a pantry, a helpful staff, shuttle service, and tons of prizes and presents to keep me happy, we went to stanford for blood tests daily. I built some solid friendships with other "sick kids" and my family somehow survived the worst thing that could happen.

I had to have frequent blood tests and biopsys, but as the scars started to fade, and I started getting to a heathy weight, the crazy things I had to do each day (including taking my blood pressure, drinking 3.5 liters of water daily, and consuming a plethera of immunosuppressive pills) started to become our normal and we got used to it. It was what we had to do, what I had to do.

Everything went smoothly and there were little-to-no complications for nine years. Until last July when we got a bad call. Again. Another call that would throw our lives into a similar panic. My cratinine was high (which means kidney fuction is low) and we were facing our first case of rejection. That panic has become the last year of my life, and has included the entirety of my summer being spent in the hospital, (and part of my fall as well) some emergency room visits at odd hours of the night, headaches so bad I was throwing up, 6 rejection treatments that all included a slough of unbearable side effects, over a thousand bajillion IVs, (my veins aren't what they used to be) some rough moments in Isolation, and a couple of blood transfusions. That doesn't even begin to cover it, but I don't feel like writing seven more pages right now.

In February this year, I was given news that is still hard for me to swallow. After completing one of my terrible immunosuppressive treatments, Rituximab, and being sedated for yet another biopsy, I was ready for the final report, and to be released from the hospital. Again. I was never really alone in the hospital, I always had dad, mom, brother, friend, uncle, grandma, someone. When the doctors walked in I was all alone and just as upbeat as I always am, excited that I would probably go home! Dr. Steven Alexander came in and shared that he had "good news, and bad news." and asked which I would like to hear first. I quickly responded with "Uh good, duh" and he responded "The good news is, there is no longer any sign of rejection" i was overcome with joy. THIS WAS WHAT I HAD BEEN BATTLING FOR ALMOST A YEAR NOW. oh. my .gosh. Was pretty close to my reaction, until he started in again, with the bad news. "The bad news is, your kidney has retained too much damage and scarring, and cannot be saved. you are going to need another transplant." what. the. fuck. is more like it, this time.

I was born with one kidney... part one.

bear with me. these first few are going to be long, but condensing twenty years of medical struggles into a few paragraphs is not so easy as I thought.

Well, it's more complicated than that. I arrived on this Earth on April 3, 1990, supposedly around 5:14 PM, but the details are a little fuzzy for me. From day one, I was complicated. The doctors discovered I was born with one normal, heathy kidney and Prickly Pete, the name that my non-functioning, peanut-sized kidney would eventually pick up. The doctors were not concerned and said I would live a mostly normal and healthy life, little did my parents know it would be anything but.

At the ripe old age of 18 months, I had my first operation. I was experiencing frequent Urinary Tract Infections which led to reflux (Urine backing up my ureters, back into my kidney) which led to scarring and damage done to my only working kidney. At age nine came more bad news, the doctors office I was previously associated with but had not had follow up with for years called and asked me to go get some simple renal (kidney) function blood tests. When we were called in for an exam and office visit they informed us that the frequent scarring was causing major irreparable damage and I had about 50% kidney function. in December of 2009 I underwent a ureter re-implant to try and prevent further scarring.

In April of 2010 we we're told the surgery was unsuccessful and that I would need a life saving kidney transplant. We immediately met with the renal team at Lucille Packard Childrens Hospital, and got things moving. After testing my mother and father, we were all quite pleased to hear that I had not one unbelieveable match, but two. From April-November that year, life was a blur. It was a situation I do not wish on any nine year old. Daily blood tests, and a completely restricted diet, that I didn't really understand, but I knew I couldn't have chocolate or salt.

Even at such a young age, I could comprehend my parents grief. It's tough being a kid with a problem, I'd imagine it's even worse being the worrysome parent of a kid with a problem. It was a great relief when we learned that either one of my parents could deliver the life-saving kidney I so desperately needed. And, although I was not invited to some of the adult discussions about who it would be, I knew my mother had to do it. I knew she wouldn't let anyone else.

On December 6th, 2000 I went into the Operating Room at LPCH where my mother was admitted just 5 hours previously. I had the support of my father, brother, uncle Dan, and Joe Bondad&Anne Marie, friends of my fathers. I remember starting to feel loopy, and I remeber my brother and dad walking along side my gurney down an unbelieveably long hallway. I remember crying, saying I wasn't ready. I remember going into the OR and hearing the noise of various metal instruments clanking together. I dont remember much else..